Robert Firth
STUDENTS at Marbella’s Montessori school will walk 5k to raise money for their classmate battling a super rare disease, known to affect only 14 people in the world.
The school children will walk from San Pedro to Puerto Banus to support their classmate Chloe Rios Borda, 11, who has been fighting the muscular degenerative disease since she was 3.
Money raised by the walk will fund research into the disease by a team of scientists in Barcelona.
Chloe’s mother, Jorgelina Borda Amezaga, is trying to raise €200,000 to finance research into the rare illness, which causes the muscular and nervous system to gradually deteriorate.
The disease causes Chloe to suffer from muscle weakness and poor muscle coordination. She struggles to maintain proper balance and suffers from fatigue.
If no cure is found for the illness, she will ultimately end up completely paralysed.
“This is the only hope we have to save Chloe from a horrible fate,” Jorgelina said.
“I just dream that Chloe has a normal life. The future that awaits Chloe if we don’t stop the disease is horrible.”
Dr. Antoni Mattila, who is leading studies into the rare condition, told The Olive Press that his team are initially reliant on crowdfunding to support their research. He said that drug companies have ‘no incentive to make an investment,’ because the condition affects so few people.
He added: “Resources for rare diseases like Chloe’s are very limited. The plan is to request funding from public and private agencies in the next months.”
The sponsored walk will depart from Restaurante La Pesquera in San Pedro at 9:30am on Monday 23rd September.
